The pharmaceutical regulation of chronic disease among the U.S. urban poor: an ethnographic study of accountability

Abstract

The Massachusetts experience of health care reform before the Affordable Care Act of 2010 reveals a moral economy of care in which expanded access was met by neoliberal demands for accountability and cost control. Publicly subsidized health insurance programs in the U.S. are deeply concerned with managing and regulating low-income residents’ access to and coverage for medications. By focusing our attention on the new forms of social relations invoked by specific techniques of governing, analyses of accountability can help us understand the ways in which subjectivities are shaped through their encounters with overarching social and economic structures. This paper presents qualitative findings from a four-year, prospective study that combined two waves of survey and chart-based data collection with four qualitative methods. Medicaid patients are made accountable to their medication regimens as they must track their supply and obtain refills promptly; regular blood tests carried out by health care providers verify their adherence. Both patients and their physicians are subject to cost savings measures such as changing lists of covered medications. Finally, patients struggle to pay ever-increasing out-of-pocket costs for their medications, expenses which may keep patients from taking their medications as prescribed. The fraught relationship between trust, accountability, and verification finds emphatic expression in the moral economy of health care, where the vulnerability of the sick and their hope for a cure confront policies designed to hold down costs.

Keywords:

• Accountability
• pharmaceuticals
• chronic disease
• United States
• medically underserved groups
• health disparities
• access to health care
• costs of care

Acknowledgements

The content is solely the responsibility of the author and does not necessarily represent the official views of the National Cancer Institute or the National Institutes of Health. I extend my deepest gratitude to the providers, staff, and patients at the clinic for sharing their expertise. This research could not have been completed without the diverse contributions of our entire research team, including Cristina Huebner Torres, Jeffrey Markham, Phuong Do, Ana Vargas, Jim Vivian, Julie Armin and Kathryn Orzech.

Notes

1. A pseudonym, as are all proper names of participants used herein.